http://leader.pubs.asha.org/article.aspx?articleid=2292558No Time to Lose: Working With Young Children With Severe Disabilities Who Are PresymbolicBrandon, a young child with severe multiple disabilities, has recently been referred for speech and language services. During the speech-language pathologist’s first visit, Brandon’s mother shares some of her frustrations. “He’s already been through so much,” she says. “He was in the hospital for so long. But now I don’t ...2001-11-01T00:00:00FeaturesCathy A. Binger

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Features | November 01, 2001

No Time to Lose: Working With Young Children With Severe Disabilities Who Are Presymbolic

Cathy A. Binger, recently returned to The Pennsylvania State University to pursue her doctorate and is focusing on children who require AAC. She has worked for the past eight years as an SLP in a wide variety of settings. Contact her by email at cab124@psu.edu. The author wishes to thank Janice Light and John McCarthy for reviewing an earlier draft of this article.

Cathy A. Binger, recently returned to The Pennsylvania State University to pursue her doctorate and is focusing on children who require AAC. She has worked for the past eight years as an SLP in a wide variety of settings. Contact her by email at cab124@psu.edu. The author wishes to thank Janice Light and John McCarthy for reviewing an earlier draft of this article.×

Brandon, a young child with severe multiple disabilities, has recently been referred for speech and language services. During the speech-language pathologist’s first visit, Brandon’s mother shares some of her frustrations. “He’s already been through so much,” she says. “He was in the hospital for so long. But now I don’t know how to help him. Is there anything I can do? Can you help us?”

Working with beginning communicators like Brandon poses significant challenges, but there is much that SLPs can, and must, do to help. Communication skill development begins at birth, with the earliest communicative behaviors serving as building blocks for all subsequent development.

What Is Presymbolic Communication?

During the presymbolic period of development, children begin learning basic communicative functions and rely heavily on their caregivers to interpret their communicative efforts. There are two basic stages of presymbolic communication: preintentional communication (the perlocutionary stage) and intentional but not yet symbolic communication (the illocutionary stage).

The preintentional stage occurs from birth to about 8 months in typically developing children. At this stage, the caregiver assigns meaning to the child’s behaviors. For example, a father interprets his baby’s cry as a request to be held. Here, the father’s interpretation makes the cry communicative.

In the intentional but not yet symbolic stage, children begin using signals to deliberately communicate with others. In typically developing children, this stage begins as early as 8–9 months. According to Jerome Bruner, these signals serve three main purposes:

Behavior regulation (e.g., Olivia protests by vocalizing loudly when her mother puts her to bed)

Social interaction (e.g., LaShondra wants a hug and reaches toward her father as he passes by)

Joint attention (e.g., Brandon looks back and forth between the window and his brother when an ambulance goes by)

There are many different types of intentional behaviors, which may include the following (adapted from Siegel & Cress, in press):

Directing a signal toward a listener to deliberately solicit partner attention (e.g., gazing at mother to gain her attention)

Persistent signaling until the goal is accomplished or failure is indicated (e.g., banging on lap tray until grandmother comes back)

Terminating the signal when the goal is met (e.g., ceasing vocalization when rocked)

Showing satisfaction when a goal is attained or dissatisfaction when it is not (e.g., smiling when given a cookie)

Changing the signal quality until the goal has been met (e.g., crying even louder when ignored)

Alternating gaze between the goal and the listener (e.g., looking from juice to father and back to juice)

Conveying a particular goal or message non-symbolically (e.g., holding up doll to show sister)

Ritualizing or conventionalizing the signal form within specific communication contexts (e.g., shaking a hand to indicate being finished)

Awaiting a response from the listener (e.g., tensing up in anticipation of being tickled again)

What Are the First Steps?

The first steps in identifying and supporting early communication are the same for children in either stage (that is, children who are preintentional or those who are intentional but not yet symbolic):

Select a range of functional, everyday activities in which the caregiver and child interact.

Videotape the activities.

Review the tapes with the caregiver and, together, carefully observe the child to identify communication behaviors. With children who have severe disabilities, these behaviors may be quite subtle. They may include facial expressions (such as smiling, laughing), eye gaze, vocalizations, gestures, or idiosyncratic behaviors such as banging or rocking (e.g., rocking to show displeasure).

Teach caregivers to recognize these behaviors and respond to them consistently (e.g., if Brandon smiles as his mother picks up a raisin, she should treat his smile as a request by giving him the raisin). These consistent responses are precisely what teach children the power of communication.

Siegel and Cress’ list of intentional behaviors above can be used while reviewing the tapes to help identify communication behaviors. Identifying which behaviors the child does and does not have will help guide goal-setting and intervention.

What Is the Focus of Intervention?

For beginning communicators in either stage, the focus of intervention is two-pronged: intervention with the child to ensure that he or she has the means of communication and the skills to participate effectively, and intervention with caregivers to ensure that the child has opportunities to communicate and that caregivers provide the necessary scaffolding support for the child to communicate effectively.

Research has shown that adults respond to only 7%–15% of the initiations of children who have severe disabilities, so it is absolutely essential to teach caregivers to both recognize and respond to these behaviors.

Keep in mind that children who are presymbolic are very much tied to the here and now. They are literal learners, and for intervention to have any lasting, functional impact, it must take place with everyday people in everyday places doing everyday things.

What About Speech Development?

Encouraging vocal and verbal communication is always a part of intervention with young children who have severe disabilities, as it is inappropriate to make any type of long-term prognoses with children of this age. The focus of speech goals will, of course, depend on the child’s motor skills and developmental level.

What happens when these children do not receive appropriate early intervention?

The cost of not providing early, functional intervention is very high. The urge to communicate is basic and powerful, and many challenging behaviors, such as screaming, biting, and self-injurious behaviors, seem to result from long-term, failed attempts to communicate.

Fortunately, appropriate early intervention may prevent the development of challenging behaviors. Socially inappropriate behaviors can be identified early on and shaped into alternative behaviors. For example, if a child screams when he wants to be picked up, he can be taught to reach out and vocalize instead. It is critical to ensure that the alternatives are equally efficient and effective in getting the message across. Teaching caregivers to consistently recognize and respond to early communicative attempts is another important component. This family-centered approach ensures that beginning communicators have both the means and the opportunities to communicate.

What’s Next?

The list of resources provided in the sidebar is a good place to start. This article provides only a brief overview of this complex topic, and interested readers are encouraged to make use of these excellent tools.

Addressing the Needs of Persons With Severe Disabilities

ASHA is a member of the National Joint Committee for the Communication Needs of Persons with Severe Disabilities (NJC), a multi-disciplinary committee addressing the many needs and issues of concern to persons with severe disabilities. The NJC recognizes the essential roles played by professionals from many different disciplines in the delivery of appropriate communication supports and services for persons with severe disabilities.

The purpose of the NJC is to promote research, demonstration programs, and in-service/pre-service education to help persons with severe disabilities communicate effectively. Member organizations include the American Association for Mental Retardation, the American Occupational Therapy Association, the American Physical Therapy Association, ASHA, The Association for Persons with Severe Disabilities, the Council for Exceptional Children’s Division for Communicative Disabilities and Deafness, and the U.S. Society for Augmentative and Alternative Communication.

The NJC developed a consensus paper that set forth a series of practice guidelines, including a “Communication Bill of Rights,” a set of recommended assessment and intervention practices, and a list of essential knowledge and skills for teams serving individuals with severe disabilities. These guidelines were endorsed by the executive boards of all the member associations and subsequently published in an ASHA policy supplement [National Joint Committee for the Communication Needs of Persons with Severe Disabilities. (1992). Guidelines for Meeting the Communication Needs of Persons with Severe Disabilities. Asha, 34 (March, Supplement #7), pp. 1–8. Also available on ASHA’s Web site.]

The NJC also developed a self-assessment instrument that translates the principles and practices described in the 1992 guidelines into a set of quality indicators. The resulting “Communication Supports Checklist” [McCarthy, C., McLean, L, Miller, J., Paul-Brown, D., Romski, M., Rourke, J., & Yoder, D. (1998). Communication Supports Checklist for Programs Serving Individuals with Severe Disabilities. Baltimore: Brookes.] is designed for use by interdisciplinary teams in a variety of service settings and agencies.

Most recently, the NJC has developed a position statement and technical report concerning eligibility for communication services and supports. This emphasis emerged in response to disturbing reports that certain educational and health care agencies are routinely denying eligibility for such services to children deemed too young, too old, too severely disabled, or lacking purported prerequisite skills to benefit from communication services, including AAC. The full text of this draft position statement and report is available from dpaulbrown@asha.org.